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2 years ago

@dazmell40 , I have the local county MS Treatment Centre close to. When I was formally diagnosed in my early 40s, I went down there and walked in for a chat.

I’ve been a member ever since, but never really went back there again until about 15 years later. I just didn’t feel like that I “belonged” in that environment. Whether it was an age-thing or whether it was a lack of visible disability on my part, I’m not really sure.

In hindsight, I should have hung around down there and fed off the experience of those MSers. Well, there was no interweb back them!

But, realistically, the younger demographic have other demands on their time through the day. Primarily, it is expected that they should work for a living. More so these days, with the DWP et al forcing that issue. Alternatively, there will be young families to look after.

This is where the concept of Shift.MS came from, to give the younger demographic a place to support one another, in an environment where they were comfortable.

2 years ago

I think maybe with the help and support of local GPs and medical staff you could use them to speed the word if you can get them onside. Then it’s just getting them the stay there once through the door I was young once I Remember always having something better to do that go tet local youth club it’s not same but same principal. It is a tough one. Making it fun and less serious I think I don’t mean party hats and pop n crisps that won’t cut it. I myself I’m only 30 and not yet diagnosed just in the process so I’m not sure if I really have the right to be waffling on about it anyway but if it were me I’d want to go if I could just forget about it all have a giggle and at the same time if I knew I could talk to people and get information if needed I’d be all for it

2 years ago

Don’t take this the wrong way but I found a lot (not all!) of the older members at the drop in held by our branch have a somewhat downbeat approach to the situation. Luckily the head lady sat me with a specific group of people who had a very positive attitude but until I was pointed to them I was ready to turn and run- I didn’t want sympathy from the man in the wheelchair or the lady having spasms. I know that sounds strange but it’s a slap in the face when you’re looking at your reality. Fact is that our prognosis is potentially a lot different to previous generations due to revision of which and when DMTs can be administered. I met a lady doing a sponsored walk and she introduced me to a Facebook group which organises meet ups, usually for meals and drinks outings but you need to make your own way there so there’s no minibus and people need to be happy moving around- whether that be still able, using walking aids or in a chair. The outlook of the ladies was so different and it was seen as much more of a social gathering than as a support group (which it very much still is) and we obviously chose somewhere that could accommodate wheelchairs etc, and we all still talked ms. I was the youngest at 29. A few of us had been put off by the ms society drop in but now visit together. A lot is word of mouth so you need to do some digging to find sufferers but online groups are a good place to start. And we as young people are usually early on with the disease so want to do “normal” things, not go on an outing to a village hall for fish and chips or other things that have a residential home feel to them (again- no offence intended and they do serve a purpose to people who need them as a way to get about and socialise).

I will just add I have majority spinal activity and have been told by my consultant that I’m more than likely going to end up losing mobility, and it is scary. I don’t want to take anything from the people I met at the centre because they were all really friendly and accommodating, and lovely people, they just acted like I was condemned already and I’m not ready to give up without a fight! X

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